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Restless Leg Syndrome
I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ....mostly worse in the late afternoon and evening. It's usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can't remain still.......upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago..........he confirmed that it was Restless leg syndrome............there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms....there is not a definitive diagnostic test.........all bloodwork etc.... is normal . I now take Gabapentin, and Klonopin to calm the "restless" nerves...........there is no cure for this ( my Neurologist says )........It's just something you have to learn to live with and take those medications for it..........It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS........there is a possiblity that I had LOW thyroid for years before I was diagnosed with it........hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that.....anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS........appreciate any feedback. Thanks Jim B.
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I was diagnosed with RLS a about 5 years ago. I was going through a severe depression and at first was diagnosed with agitated depression. I was restless all the time and my legs could not be still. My legs were in constant motion to the point that my calf muscles were very sore and I still moved. I constantly felt as if I was going to bust out of my skin. It became evident that the restlessness and the depression were not related and I went to a neurologist who diagnosed me with RLS. I am taking Pramipexole and the symptoms are better and are tolerable. I still move my feet constantly, but can keep my legs still. I wear a hole in my one shoe from wiggling my toes ( duct tape helps to prevent that) I do need to get up and walk around and I still have trouble sleeping at night. I see quite a few people who say they take Gabapentin for RLS. I tried taking it and had terrible side effects.
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3 ReactionsHi, @ssbionicknee - I'm glad to hear the restlessness and depression were ultimately sorted out and that you finally knew you were dealing with restless legs syndrome (RLS). That is challenging to still have trouble sleeping at night 5 years after your diagnosis.
Here is some Mayo Clinic information on RLS that may be interesting for you: https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/symptoms-causes/syc-20377168.
You mentioned you tried gapabentin for your RLS and had terrible side effects. I am not a medical professional, but I will say from reading members' comments on gabapentin here on Connect and from my personal experience taking it for postherpetic neuralgia, that it seems people have a wide range of experiences with that medication.
Are you taking another medication now to manage the RLS, @ssbionicknee, or are you looking for possible alternatives?
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2 ReactionsI am interested in how much tonic water you need to drink? The diet has aspartame which is not good. But 12 ounces has 32 grams of sugar. Just curious. Thanks.
It can be an inherited disorder. In my case, my grandmother had a terrible case of it. My doctor checked my “feratin” level which is a bit different than your iron level. You need to check specifically for it. Milne was a low normal so he has me taking Vitron-C which is over the counter. I take it 3 times a day with food always. I am also drinking tonic water several times a day. The last two nights I have not been bothered, but we shall see if that lasts. I also have hypo-thyroidism which my doctor tests for often. I only take Synthroid however. I have found whenever I used the generic, my results were not normal. But that is me. I also started using a heating pad before going to bed, resting my legs on it. When you are unable to get a good night’s sleep, it is so discouraging and wearing physically. It. Is good to know we are not alone in this
How much tonic water do you drink? I am currently taking Vitron-C because my doctor said my Ferratin level was a low normal. There is a lot of sugar in tonic water so curious how much I should be drinking.
@vickieay hi there. I was told to drink tonic water for my severe muscle cramping. It works somewhat
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2 Reactions@gaylea1 I hope you can get some relief from those miserable cramps. I kept some tonic water close by in my bedroom and drank some when I had those cramps. I really was never sure if it helped or not, but I kept drinking it, just in case it did.
JK
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2 ReactionsI've been interested in hypnotherapy as a treatment for RLS! Our osteopath in our rural community used this approach on me when I was young, and it worked (almost like magic). However, I've had difficulty finding a practitioner, and I would like to make sure who I consult is a reliable and licensed treatment provider. I've run into people who advertise they are knowledgeable and 'hang out a shingle' but they don't have any formal training.
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1 ReactionI've learned that caffeine and alcohol or any type or in any form, if I consume it after 3:00 p.m., severely increase my restless legs at night to the point that i am unable to fall asleep until 4:00 or 5:00 a.m. the following morning. I tried tonic water also since I was told that it could help (but not by a doctor), but it didn't help me at all. If someone is having trouble with RLS at night and are consuming alcohol, perhaps that might exacerbate their symptoms. (My doctor at the Sleep Center confirmed that this is possible when I mentioned it to her.)
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2 ReactionsWhat a great tip - I have never tried a recumbent bike -- I have been up all night walking, and I mean literally all night until 6:00 a.m. at times, and since I've had several back surgeries - walking that much can become painful. A recumbent bike would be a nice relief. Is there a particular one that you like better than another?
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